Friday, June 24, 2011
Not Your Typical Friday Post
I think part of my sinking spirits yesterday came from an article I read in a New Yorker by a man whose daughter had died from a very rare childhood brain tumor. One moment the child was a healthy ten-month old, progressing joyfully along the path of development, beloved by her mother, her father, her sister. The next moment, a diagnosis, followed by 108 days of torturous treatments and then death.
The article, which was in the June 13th and 20th edition and which was entitled The Aquarium and was written by Aleksandar Hemon, was honest and gritty and it dealt with how parents cope or do not cope with such situations. Such unimaginable situations.
After reading it, I felt angry. Not at the father or the mother, of course, or even at the disease- disease has no agenda. It just is.
I think I felt angry at the doctors who must have known that there was no way this child could live with such an aggressive tumor which was so rare that there isn't even a chemo protocol for it. And yet, they kept the parents' hopes alive as they kept the child alive, albeit in a state of profound suffering for the rest of her short life. The surgeries, the chemos which wiped out her immune system and created such agony for the baby, for those who loved her and tended her. They allowed the parents to have even a shred of hope so that even as the baby's major organs failed and they gave them the odds of any more interventions helping at all, the parents said, "Yes, please, do whatever you can. Don't let my baby die," and isn't that what any parent would say?
I don't know if my anger is well-founded. Perhaps the doctors did think there was hope. They had more knowledge of what was going on than I do, sitting here so far removed from the reality of the situation.
But I have personally witnessed the keeping of a sure-to-die baby alive by doctors with all of their surgeries, their medications, their interventions and machines to the point where that child's entire brief life was made of nothing but a tiny plastic box in which he laid, tubes everywhere, tiny veins constantly sliced into, tiny chest opened again and again, until the inevitable happened and he died, his parents finally able to hold him in their arms only in death.
Their solace, if there was any solace to be found, lay in the fact that their child would never be cut into again.
And yet, perhaps there is some comfort to be found in the fact that everything which could have been done had been done.
Medically, at least.
I don't know.
But I have to wonder at the way we here in the Western World define doing everything which can be done. Is it really honest and truthful and is it even slightly helpful to do all of the treatment humanly, medically possible when the outcome is so plain? Is it right to give people hope when perhaps there really is none? To offer them the barest eyelash of a miracle when any parent would grab onto that eyelash as if it could offer them safe passage through the stormiest of seas?
Would it be better to offer the parents compassion and help with the reality of the situation and let them live with their child for the rest of whatever life she has, offering palliative care and support so that when the moment of death comes there is not such shock, such disbelief, such a rendering of the soul into shattered fragments?
That there could have been at LEAST a small eyelash's hope of acceptance?
Again. I don't know.
We don't know how to deal with death here. Or suffering. We are not good at that. Here's what the author said about suffering:
"One of the most despicable religious fallacies is that suffering is ennobling- that it is a step on the path to some kind of enlightenment or salvation. Isabel's suffering and death did nothing for her, or us, or the world. We learned no lessons worth learning; we acquired no experience that would benefit anyone. And Isabel most certainly did not earn ascension to a better place as there was no place better for her than at home with her family."
I think that one of the reasons I cannot go along with religion is the very fact that parents lose children, even the most faith-full and good and prayer-full parents. Could there be any prayer more unselfishly prayed than the prayer of a mother to save her dying child?
I doubt it.
And I am not trashing medical science here. It makes great strides and its practitioners, the good ones, save countless lives, give innumerable years of good life to those to who would have died without them and their knowledge, their care, their ministrations. I think of Kathleen's doctor and the entire clinic up there in Thomasville. I think of Kathleen who, if she had stayed with her original doctor, would most likely be dead by now but who instead, is in Spain with her father.
But sometimes, there is no hope and when doctors know that and yet continue to treat and give hope by the mere fact of that treatment, it is just plain wrong.
It is not death which is the enemy. It is our inability to accept it, even to the point of creating more pain and suffering than would naturally occur if we could just try.
We keep people alive. That is what our doctors do. That is their job, as they see it, and yet, all of us, every one of us, will finally and at last, die. When will we learn that?
I don't know but I know I have been present at deaths where there was acceptance and there was pure, strong love and there seemed to be something there which carried us all through the passage together and it was holy.
As holy as a birth and I swear that's true.
And I also know that it's true that if I were in the position of that author or his wife, I would have most certainly grabbed onto what the doctors offered me in the way of hope. That I would have allowed myself to believe that despite everything and all evidence to the contrary, my baby would be the one to live, to be able to grow up strong and as healthy and as smart and unaffected as any child who ever lived. Because that is what I would have wanted to believe.
But would it have been right for the doctors to offer me this hope when as the treatment progressed it became more and more apparent that it would not, in the end, end that way at all?
Where was the point when the doctors should have said, "Look. Your baby is not going to make it. Take her home, love her, cuddle her, be with her for every second that you have with her. Hold her in your arms. Do everything you can to love her until she goes on."?
Wouldn't that have truly been doing everything that humanly could have been done?
Sometimes I think that our godspirit lies not in our ability to try to reverse what is inevitable but in our ability to accept that which is inevitable.
Or to try.
Well. That's what I'm thinking about today and I wish I weren't but I am a human and as such, need to think about such things.
And my heart is sad for us poor humans, our suffering, our pain.
Tell me what you think because I think this is something we all need to talk about. The title of that piece, "The Aquarium" comes from the author's feeling that he was in an aquarium when his daughter was ill. That everyone else in the world stood outside of where he was and that what he and his wife were going through was impossible to share with others. Wouldn't it have been better if we were not so afraid of death, of talking about it, of being so superstitious that just admitting the possibility of death makes us feel as if we are beckoning it to us and the ones we love so that when we or others we love are experiencing something like this, we do not have to feel that we are in an aquarium?
That we could feel arms around us, helping to hold us up, even as we are holding the ones who are dying?
If we weren't just so afraid? Not only to reach out for help but to be able to offer it purely and unselfishly?
I don't know. But I think so. I really do.